Breast Cancer is a Family Experience
The fight against breast cancer is often seen as a series of choices made between doctors and patients about best treatments. Understandably, the conversation centers on how to treat the disease in the body. But there are other critical elements that shape health outcomes. Psychological and social aspects, such as how people diagnosed with cancer cope emotionally, support of friends and family, and the experience of making decisions about what to do next are all essential to the health of the patient.
Cancer care must begin to integrate social and psychological science to best serve patients. That is the vision of University of Florida College of Journalism and Communications Assistant Professor in Advertising Carla Fisher. Since graduate school, she has been on a quest to help mothers and daughters better communicate about breast cancer and its risks, as well as integrate communication science into clinical practice. She insists that cancer is a family experience and must be treated from that perspective. Doing so will improve the health of the patient and potentially protect other women at risk.
We sat down with Fisher to discuss her work, what change can be made to fight breast cancer and what she is working on next.
What are you most passionate about?
What drives my research is looking at the intersection of family communication and health. In cancer care, whether it be treatment for cancer or even in decision-making, the family perspective is often excluded. It tends to be more biomedical or only patient-centered. I am really interested in how [breast cancer] is very much a family experience. I focus on talking with patients and families about their experiences in a way that highlights how their interactions, and the ways in which they communicate, affect their ability to make decisions and to cope, and how those communication patterns can actually impact health outcomes. Ultimately I’m interested in helping families to communicate in healthier ways.
Healthy communication practice is not something we are innately born with, so we need help learning how to communicate in healthy ways. And it is different depending on our role in the relationship (mother vs daughter) and age. Part of what I do is gather that information for families so they can cope in better ways, but also get the health care system and community on board with the idea that you have to be treating the family as well as the patient.
What are key themes found in your research for family communication around breast cancer?
People’s age or generation, the sociohistorical context in which they were raised, affect how they prefer to communicate. For example, I will talk to young daughters in their 20s and 30s whose mothers are in their 60s or older and have breast cancer. The daughters want to know everything and think they are entitled to that information, and they want that information so they can be there for Mom in a supportive manner. But the flip side is, Mom doesn’t necessarily want to share everything. Older generations of women tend to view health information as more private. A lot of that has to do with how they were raised and norms of privacy being different today than they were 30 years ago. So for mom having that sense of privacy is important to her, and for daughter that can be hard to understand. There is a negotiation that has to happen where you have to understand what works for you might not work for your mother or grandmother. In my work I strive to hear their stories so that we can better understand how to tailor communication in healthy ways. You often don’t think about age or generational differences as an influential factor but it is a big one.
Also, every family is different. So what works in one relationship might not in another. However, we also know that being open does facilitate healing. I’ve even found in my own work that those mothers and daughters who have a history of being more open also have better physical and relational health after diagnosis. We just have to keep in mind that HOW we facilitate that openness is going to be different based on relational role, mom or daughter, who is diagnosed, age, gender, etc. We have to keep those things in mind and at the same time, allow the person who is diagnosed to set the tone as to what works for them.
What helps families be more open?
We need to learn how to facilitate openness but also understand that how we define openness might be different for different family members. I will talk to an older woman, like in her 70s, and then I will talk to her daughter, who is in let’s say in her 30s or 40s, and the mom will very much think that they are being open, and the daughter will not. She feels like her mom doesn’t want to talk about it. But the mom will recall her own family and how cancer was never discussed. So for her, talking about it and being open means something different than for her daughter. Part of it is redefining what is “open.” A lot of it is perspective taking. I use more narrative methods, like interviews and diaries, to capture the stories, because I think those stories are easy for people to use as a tool to better understand their family members and how to engage in a healthier communication practice. Those stories help us understand our family member’s perspective but also provide us with some idea of what communication approaches or strategies are most helpful in facilitating openness.
For instance, diagnosed moms who have daughters in their teens and even 20s will talk to me about how their daughter will kind of shut down and withdraw That can initially feel hurtful to moms but oftentimes they know that this is overwhelming for their daughters. Her avoidance is her way of coping. At the same time, we need to help daughters cope in a healthier way. Some of the things we found that is useful for daughters is if mom initiates the conversation. The daughter is less likely to bring it up. So we’ve learned that Mom has to be willing to bring it up and not be pushy about it. At the same time, it’s important for moms to carefully weigh what they talk about, because it is a very emotional experience for younger children, including kids in their teens and 20s. For instance, daughters have said something like “I like that she’ll bring it up once and while, but it is not so serious all the time or it’s not about ‘cancer’ all the time.” Daughters have also shared that talking with mom about it is their opportunity to not make this so scary and they can also “be there” for mom, they tend to be less avoidant. Actually talking to mom about it and having the opportunity to support their mothers for the first time in their relationship can be very therapeutic for daughters to have that role shift.
We also need to think about facilitating openness and attending to families’ needs in clinical settings. For example, much of my work with Carma Bylund and Memorial Sloan-Kettering Cancer Center has focused on communication between patients and genetic practitioners. When families come in for genetic counseling it can be an opportunity to facilitate openness within the family. That might mean sharing medical information, which often times just doesn’t happen. It can also mean starting conversations about risk or prevention. In families with a higher risk of cancer due to genetic mutation or personal history of the disease, they are very concerned about prevention. One of the things we talk about is how to broach those conversations with daughters as these women are very concerned about their daughters’ future health. It often drives why they get genetic counseling in the first place—to protect their children. But we need to learn to talk about these topics in a healthy way so that it won’t be overwhelming for daughters. Something as simple as a starting the conversation after seeing a commercial or show on TV. When I first started this research, moms and daughters would mention Sex and the City or Weeds or other shows as a conversational prompt where you see these breast cancer situations. So they would talk about it. It didn’t have to be directly about them, so it made it a lot more fluid and easy for the daughter to open up a little bit.
All these examples go back to the theme of really understanding the other person you are trying to dialogue with and realizing what works for you isn’t necessarily going to work for them. Hopefully the research I have done presents stories that help mothers and daughters better understand each other’s needs and how to engage in healthy communication practice. My hope is always that they can read the story and see themselves in it and better understand where their mother, grandmother, daughter is coming from and how to approach their communication in a manner that is more comfortable for both parties.
How is your research being applied?
One of the things I always do is collaborate directly with clinicians and scientists in my research which also means creating collaborative relationships with medical institutions like Mayo Clinic, Sloan-Kettering, and a number of different community hospitals and clinics. They are always directly involved in the research which allow for research to be translated to practice more easily and ensures that I’m doing work that attends to clinical needs. These clinicians and institutions can take what we found and integrate it directly into their practice. I know that, in a way, the people I am involved with in the research in those clinical sites have firsthand information as to what these families have taught us that can be integrated directly. On a broader scale, it is really about that intervention research. I have been taking that research to develop an intervention toolkit for mothers and daughters that I hope to have funding for soon. And this is also what led me to write the book – it’s the first evidence based book on breast cancer from a mother-daughter lens and the only one written in a translational manner so that it can be used by clinicians, scientists as well as mothers/daughters and families.
One of the things I also like doing is talking to various groups about mothers and daughters. Last year a sorority had a breast cancer event. They asked me to come because they do a mother-daughter charity event. It was a wonderful opportunity to talk directly to moms and daughters about [breast cancer] and how to communicate in healthy ways whether it be in terms of coping or prevention. And after the talk I had such wonderful conversations with many of the women who had gone through or were going through cancer. Those kinds of opportunities I really like. It is an opportunity to directly talk with the families, outside of the clinical setting.
What do you see as the biggest barrier for effective communication?
For me the biggest barrier is getting integrated into the healthcare system. They are already over tasked and clinicians don’t always have time to work with the psychosocial side as much. But for me, family communication has to be a part of it. If I am able to cross that barrier and develop a mother-daughter communication program that provides a toolkit for mothers and daughters to go through, where they are reading the narratives and learning how to communicate in healthier ways and addressing the issues that are essential to both of their abilities to cope across the trajectory of cancer, that to me would change the landscape of cancer patients’ care. So that is what I’m hoping to create soon in my intervention development research. For me, the biggest barrier is getting the clinical community to be as concerned about the patient’s family interactions as I am and as families/patients are and how we integrate that into their care.
What are you working on next?
I am expanding my research program to better attend to how culture impacts mothers’ and daughters’ experiences. We know that culture, ethnicity, and race impact their experiences, as well as their relational expectations. I have some internal funding from the CTSI and STCC to interview African American and Hispanic women about their mother-daughter coping experiences. I’m also adding a method called photovoice, where they will take pictures of their how breast cancer is a mother-daughter experience. I am working with Jill Sonke and the UF Center of Arts and Medicine on that project. We want to create a photo exhibit that we hope to showcase next year during Breast Cancer Awareness Month. We will invite clinicians and families to a public event and we hope the exhibit functions as a translational tool meaning it can help change their perspective of breast cancer as not just a woman’s experience, but a mother-daughter experience—a family issue. And at the same time it can be a communication tool by helping mothers and daughters understand each other’s experiences better. The photographs are a great way to add a richer layer that you just can’t get from the spoken or written word.
I also just got an National Institutes of Health (NIH) grant in collaboration with my colleague Kevin Wright at George Mason University through the Breast Cancer and the Environment Research Program (BCERP). There are various environmental risk messages out there as to what reduces your likelihood of getting breast cancer, but they don’t necessarily ever reach mothers and daughters or families, other than a poster or brochure. One of the things we advocated for was using more social media platforms like “mommy bloggers” to disseminate these messages to see if they change people’s attitudes and behavioral intentions in terms of risk but also get mothers and daughters talking about it. We are working with a group that has a relationship with “mommy bloggers” to disseminate these environmental messages created through NIH/BCERP by having the bloggers write a blog about them this month. We are seeing whether that changes the reader’s perspective, the blogger’s perspective, and how it impacts mother-daughter conversations about risk.
The second phase of that project involves interviewing bloggers and readers about how we can culturally tailor the messages. While they have the mother daughter messages in some of these printed messages, they don’t consider race and ethnicity – other than changing pictures – which absolutely does not attend to people’s variant needs. We will learn a little bit about how that dissemination channel might have changed people’s perspectives, but also what we can do to change the messages to make them more culturally salient to moms and daughters so they have better conversations and have the information they need to engage in healthy behavior.
Want more information? Read Fisher’s book, Coping Together Side By Side.
Carla Fisher is an Assistant Professor in the Advertising Department and Affiliate Member of the STEM Translational Communication Center and UF Health Cancer Center.